March 25, 2014 - I Have Hope In My Soul

Or as my Mom used to say, “I have soap in my hole!” Speaking of my Mom, my wife and I are hoping to finally get up to Seattle this weekend and see her. I need a hug!

The GOOD:

I am better [cautious exclamation point]. I at least feel as good as I did before the last ginormous flare. A few things have happened since I last posted.

First, of course, is time. From all I can gather about TSW, the one and only thing that is sure to bring healing is time. Lots of it, which I happen to have. Good thing, as I am expecting at least another year of this

Second, is the light therapy that I have been doing for a month now. I started out at 20 seconds per side and have worked my way up to 90 seconds. I hear it takes about a month for good things to start happening, and although I can’t know for sure how much it has helped, if any, I think that it has. That’s half the battle.

The third is that I am moisturizing much less and have switched from Vaseline to sunflower oil. I’m not really on the “MW” bandwagon, I simply feel that moisturizing is not needed as much. Also, I’ve read some pretty nasty things about petrolatum and some really good things about sunflower oil, so I am giving it a shot. I don’t use much; basically to replenish oils lost during my daily shower and on my hands after using and washing them. My hands still end up with cracks at the end of the day, so at night I oil ‘em up, put on cotton gloves, then disposable vinyl gloves over them. The cotton helps my hands breath better, so in the morning they aren’t all white and sweaty like they were with just vinyl gloves, just pale, damp, and, well, better. Thanks to Dan, by the way, for advice on cotton gloves and his research regarding petrolatum.

The bad:

My ankles and feet are still pretty bad. And they hurt. The bottoms of my feet are about half covered with what looks like good ol’ conventional eczema.

Although my itching is less primarily because of brute will-power, if I succumb and scratch the explosion of almost unbelievably intense itching is spectacular, especially on my lower legs. I keep saying this, but it’s true… only TSW warriors can understand what this is like.

I am still using Ambien, but only half a pill. I will probably try going without when the bottle runs out, which will be in a week or so. Ambien has been extremely effective for me, and the sleep it provides probably should get some credit for my improvement, which is why it will be hard to give up. I am also still taking quite a bit of antihistamine hydroxyzine (Atarax), probably 5 or 6 25mg pills per day.

Lots of flaking! I have had to blow skin flakes off the keyboard to see the difference between the comma and period keys, now its the "M" and "N" keys.

Observations

Since starting TSW, I have noticed that my symptoms are symmetrical. In the good ol’ days of simply fighting eczema, I would get it, say, on one finger or on one eyelid. Now, everything I have is virtually identical left to right. I always post pictures of only my right side, but the left side is virtually the same. I wonder if this is a hallmark of TSW.

I have also noticed that I seem to be healing top to bottom. My neck and shoulders, once a trouble area, are now almost normal. The insane itching on my chest moved to my stomach, then thighs, then calves, which is where it is centered now. I am maintaining my belief that my body is basically emptying itself out of the symptoms of TSW. Okay, my hands are a bit of an exception, but then they are always getting into things.

Bottom Line: I have soap in my hole!

Homeopathy

A slight diversion. Someone over on the ITSAN forum asked about homeopathic psorinum, and I responded with the following:

One of my hobbies is skepticism and as such I am familiar with homeopathy (not to be confused with naturopathy). I encourage anyone considering homeopathy as something to be used in place of conventional medicine to do some neutral research. A good starting place would be to read the entire naturopathy article in Wikipedia.

I am a big fan of skeptic James Randi, a former magician that has turned into an investigator of the paranormal and pseudo-science. He is known for the Million Dollar Paranormal Challenge where he will give $1,000,000 to anyone that can prove paranormal anything under controlled conditions agreed to by both parties. He hasn’t paid anyone.

He is also known for his stance against homeopathy and one of the stunts that he pulls is to take massive overdoses of homeopathic “remedies” such as sleeping pills. Nothing happens because true homeopathic products rely solely on one thing: the placebo effect. That said, I would not recommend doing this as many products labelled homeopathic contain actual ingredients.

What’s ironic about all this, and one reason I posted here, is that if I were the eczema laden child of parents that believed in homeopathy and they gave me homeopathic remedies instead of conventional medication, I would not be going through the living hell of TSW. It just so happens that the cure for what ails us is to do nothing at all. Homeopathic remedies do this quite well.

I added the following one day later, after a couple of responses from those with positive homeopathic remedy experiences:

Please let me know if my posts are inappropriate or in violation of ITSAN rules or their intent, as I love and respect ITSAN dearly and do not want to jeopardize my relationship with it in any way. I will post this on my blog too if anyone would like to discuss this further there.

If okay, I would like to add a couple thoughts. First, for anyone that has had a positive experience with homeopathic remedies PLEASE read the entire article in Wikipedia and understand the 200 year old principals of how homeopathy is supposed to work before endorsing it. Please. I refer to Wikipedia because although not perfect by any means, it is the most neutral source I know and has plenty of verified references. The internet is bloated with BS, including convincing sites promoting homeopathy. If you dig deep, however, you will find there is virtually no peer-reviewed double-blind trials that support homeopathic principals. None.

Some homeopathic remedies actually work not because of the homeopathic ingredients, but because the inactive ingredients provide relief. Eye drops and nose drops are perfect examples because you could literally use plain water or saline and obtain positive results. Also, some homeopathic remedies include conventional medicine or naturopathic ingredients that does actually work. That reminds me, do not get “homeopathy” and “naturopathy” confused. They are different in the most fundamental ways, yet many people do know the difference and use the terms interchangeably. I was having a discussion with the manager of my local CVS, and even she didn’t know the difference. I was starting to get upset that CVS sells homeopathic remedies when I realized that behind the front counter is a wall of cigarettes. They only care about our wallets, not our health.

Most homeopathic remedies, especially those for children, are for conditions that are temporary, such as colds, that go away anyway. “Tag Away” as seen on TV is an exception to this and the TV ads are convincing. Yet look for neutral reviews of Tag Away, such as on Amazon, and you’ll find that the product simply does not work at all. And good luck getting your money back.

Anyway, I could go on and on, but there’s really only two things to remember:
1. Do not confuse homeopathy and naturopathy.
2. Understand how a product or method supposedly works before using or endorsing it.

I feel better now.

March 10 - Into Month Nine

The GOOD:

Hands are much better. If they become cracked I have found that wearing vinyl gloves for the night (without any moisturizer) will quickly calm them down.

The BAD:

I have been on phototherapy for 2 weeks and was really hopeful it would make a difference. Nothing yet. I am thinking that it will just take a bit more time. I started out a a very low dose (20 seconds) and am increasing the dose by 15% each time. I have yet to get to a point where I show signs of turning red, and my understanding is that I need to be at or close to that point for positive effects to show up. Onward.

My legs and feet continue to be the worst, with insane itching and pain after I give in and scratch.

February 28 - My Brother

I have now taken my second phototherapy, and to be honest it has made my itching worse. I was anticipating that, as I have heard that sometimes it makes things worse before it makes things better. I had a particularly intense itch session this morning and my legs are now raw.

In the middle of my itchfest this morning I was reminded of my oldest brother Paul, pictured above. I am the youngest of five and he is the oldest. He is also on my short list of most admired people, and I love him dearly. About 10 years ago, when he was about the age I am now, he died from complications of type 1 diabetes. He decided he was ready to be with God and stopped his dialysis. He died peacefully and honorably surrounded by his loving family and friends.

In the final years of his life his circulation became bad enough that he lost fingers and eventually had both legs amputated. It didn't slow him down one bit and I never heard him complain about it. Not once. He felt he could be an inspiration to others. He was, and continues to be.

Now, when my legs itch I can remind myself that they are simply shouting at me that they are there. I have legs.